Jonny Kennedy
The Story of the Boy Whose Skin Fell Off
as told to
Roger Stutter
foreword by
Nell McAndrew
Published by Roger Stutter
Smashwords edition
Copyright © Roger Stutter 2007
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Table of Contents
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Pictures Index
I WILL never forget the day I first met Jonny. I had agreed to help support the DebRA charity by taking part in a photo shoot with several children who had EB and their families. We were going to release butterflies as a symbol of the delicate skin of someone who has the condition. At the last minute I was told there would be a man there called Jonny who wanted to meet me.
The event was in Hyde Park, London, and the sun was shining, not a cloud in the sky, a perfect day. I didn't know what to expect or what I was going to say to any of the people there, especially Jonny as he was older. I mean, what do you say to someone who has had to go through so much and knows that he is dying? I needn't have worried though, because from the moment I introduced myself to him and we started chatting it was like we had known each other for years.
Jonny was very open about his condition, and wanted to share his experiences. He was very articulate, funny, charming - and a bit cheeky as well! I thought I was controlling my emotions well, until he started telling me that he missed being cuddled. His severe form of EB meant that a simple thing like a cuddle could cause him so much pain, discomfort and even blistering. I couldn't hold back my tears any longer, and began to cry. I gave him a cuddle, very gently. I could never, ever imagine what he had had to cope with all his life. After I left him that day, I couldn't stop thinking about him.
Jonny had invited me to his house warming party. He had given me his card with his address and phone number on, with the date written on the back so I wouldn't forget when it was. I was determined to be there no matter what. In the meantime, Jonny and I kept in touch by text and occasional phone calls. The party was brilliant. His family were there, it was lovely to meet them, and his brother cooked up a great barbecue!
That day, I told Jonny I was going to run the London Marathon to help raise more awareness and funds for DebRA, along with my other charities including Cancer Research UK, and that he had to be at the finish line for a cuddle! Unfortunately this wasn't to be, as Jonny died before the marathon took place. I did complete the run, with tiger tattoos on my arms in his memory. I burst into tears at the finish as I thought of him. I was also running for my dad who had been diagnosed with cancer and had recently undergone chemotherapy treatment. It was a very emotional day.
Jonny's mum, Edna, was there though, and she presented me with a gift that Jonny had left for me before he had died. It was a pretty necklace with a star pendant and a message that read, 'Friends are like stars, they don't need to be seen to know they are always there. Love, Jonny.' Well that was it - I burst in to tears!
Not a day goes by without Jonny being in my thoughts, and the number of people who are now aware of Jonny and EB is incredible. I feel very fortunate to have met such a special person, and I will never forget him.
Nell McAndrew
THIS is the story of my friend Jonny Kennedy, written over a long period of time, whenever he had the energy to talk to me. It is the story of an extraordinary life, tragically short, but lived to the full. Jonny died before we could finish the book together, but I've done my very best to finish it for him. Those who knew him say he shines out from its pages.
Jonny was born on November 4th 1966 with the debilitating disease Dystrophic Epidermolysis Bullosa, a condition that was slowly turning him into a ball of twisted flesh. He existed on this planet without one moment of painless life for almost 37 years. Yet through all the suffering shone a clear bright mind and an unbelievably strong character who wanted to learn, to interact with people, and to have lots of fun on the way. Ultimately, Jonny just wanted to party.
To understand Jonny Kennedy you have to suspend your belief in what a human actually is, for Jonny did not live life like you or I, and didn't see things the way ordinary folk see them. How could he? He never experienced many of the things ordinary humans take for granted: driving a car, getting a job, having relationships, having kids, even simple pleasures like strolling in the countryside or swimming in the sea. None of these things were for Jonny.
Yet in the midst of all that was horrible emerged a sharp mind, inquisitive nature and fun personality that, in a remarkable way, has healed many across the globe. That was Jonny, and I hope that, in completing this book for him, I have done my friend proud.
Roger Stutter
THE day has finally arrived. Ever since the glider flight was first mentioned I've been excited. Because for the shortest of times, for a few special minutes, I'll be free.
I'd like to say I got up early, but getting up early is not a Jonny Kennedy concept. I did notice, while my carer was attending to me, that the sky was a pure crystal blue: a beautiful summer's day. I wish my friends could be with me today, sharing this adventure. But there's only room for one lucky person up there and, for once in my life, that one lucky person is gonna be me.
I usually have the patience of a brick, with no need to hurry, but not this morning. I'm raring to go. Even though I have to take my time, and things like dressing and getting out of bed have to be done slowly, I'm eager to get ready and get going.
When I'm ready I'm stuffed with so much padding beneath my clothing I look like I weigh about 20 stone. I'm carried into the garage, then placed into my chair, which I manoeuvre into the back of the van to be clunk-clicked for the trip. I'm tied into place, and then we're off.
To my surprise the disused airfield we're heading to isn't all that far away, so we're there before the discomfort of the journey starts to bother me. My heart is beating almost as fast as it does when I think of Father, although it's excitement rather than anger that's getting my blood pumping today.
The glider, a smooth, engineless piece of art, sits in a field with a wing tip touching the grass. The pilot, professional and assuring, smiles as I joke with him to calm my nerves. Then I'm lifted, fitted into the cockpit, wished 'good luck' and left alone with the pilot, ready for take-off.
The glider is hooked up to a wire rope. Everyone stands clear. My breath is coming short and fast as the wire is pulled taut and, like a slingshot, whoosh, we're flying. I don't feel scared, only exhilarated. All I can hear is the sound of the air as we slice through it and climb into the huge, blue, open sky. The pilot pulls at a lever, the wire rope falls away, and we're on our own and free.
It's the freest I think I've ever been, and it's great. A 'Yippee!' escapes my lips as we turn, and a 'Wayhaaay!' as we swoop down. Sitting behind me, the pilot calls out points of interest on the land below, but, as beautiful as the land is, it's the sky that fascinates me as we duck and dive with nothing but air currents in our way. A sigh involuntarily leaves my lips, because I want to eat it all. To grasp it and hold it tightly to my chest. But such a call for freedom, sadly, I cannot heed. And although it seems to last a lifetime, it does come to an end. And, as we whoosh back towards the ground, I'm so contented that even the bumpy landing doesn't hurt.
We're back in the real world, and people crowd around. I'm unplugged, carefully unhooked, lifted out, then pampered over. I thank the pilot I only wish we could have stayed up there longer. When I die and my spirit is free I'll be back up there, playing with the angels, getting them off their little clouds, doing drops of a thousand feet and then pulling up, spicing things up a bit for them. But, hey, this was a good day for Jonny Kennedy, I can tell you that.
The day ends back home in my private little world, where I have to mark it, as I mark all my special days, with one of my favourite cigars. I mellow over a large glass-worth of brandy, daydreaming of those thrilling moments of freedom, which were mine such a short time ago.
DARK clouds gather outside and there is a sense that it is going to rain, although that doesn't matter to me as I lie cosy in my bungalow, brandy and cigars by my side. My name is Jonny Kenned and I am a 36-year-old man. God knows how I have lived this long. I'm approximately five feet tall, squashed and so crunched up by my condition. I'm a small, hairless, bandaged human being. The whole day has been spent lying around and relaxing, watching TV, drinking alcohol, smoking the odd cigar and just chilling out. Today is what I call a 'dossy day'. A day on which I do absolutely nothing. A day for psyching myself up in preparation for whatever the morrow will bring.
A few brandies later and I am relaxed. Tomorrow is tomorrow, but what of today? What a life, if you could call it that. Why am I the way I am? Why do I have to suffer all the time? What is it all about? Why me? All questions I've heard many ask of themselves. But today it is my turn, and I ask them of myself.
To answer them, though, I need to travel a long way back. So stay with me - and you will need all your courage and understanding on this journey. All of your emotions will be exercised by the story of Jonny Kennedy, I can promise you that. But stick with it, for you will learn a lot, too. In fact, we will both learn together. So let me begin by explaining why I need 'dossy days' and alcohol. Apart from the fact that I enjoy them, of course.
Dystrophic Epidermolysis Bullosa (EB for short) is the condition I suffer from, and it has been the bane of my existence from day one. I have very soft skin due to the fact that there is no 'glue' between the layers leading down to my flesh. So when my skin is banged or knocked it just comes away or blisters, which causes sores and huge scabs to form. This can - and does - happen all over my body, and inside my body, too, in my mouth and throat. As I'm sure you can imagine, the red-raw flesh sores are unbelievably painful. Even after 36 years, it's still difficult to get your head around the severe pain.
The chances of being born with EB are something like 1 in 300,000. Both parents must carry the faulty gene, and if they pass that down you'll end up with my condition. I like to think of my skin as being like Velcro, only with some of the hooks missing. So any bumps or friction pull the skin off. And then you're knackered.
Even if I knock myself gently, fluid will appear between the flesh and the skin. The fluid is a salty mixture, a bit like sea water. Pure protein, they tell me, which my body is losing all the time. I have to burst these blisters, otherwise the fluid will build up and the blisters'll spread and get bigger, sometimes stretching up to six inches across, and pulling what little skin I have away from my flesh. So I have to burst them, which is agonising and so delicate. Then the area has to be bandaged, because it's just raw flesh open to the air. If it was left unbandaged I would become one huge, hard, encrusted scab, and would be in horrific pain every time I moved. And believe me, I've been there and it's not a pretty sight.
I suppose I do look a little bit different from the norm. I don't know who Norm is, but I look a little bit different to him. A lot of people ask me if I've been burnt when they see me. I guess that's what it looks like to them, since I'm covered in sores and almost totally bandaged. You might have seen me around, in my electric wheelchair and white cap. A lot of people comment on my cap. It's become a bit of a trademark for me. Quite a fashion-setter, I am!
The pain caused by my condition is almost always too much to bear, and the illnesses and diseases you can pickup without skin to protect you are endless. Once bandaged, it's a case of waiting for the affected area to heal. This takes a long time because the new skin is not the same as normal skin. It's very much like tissue paper or filo pastry and comes away with extreme ease, causing even more problems. Things happen to me spontaneously too, without me having to knock myself. Often it depends on my blood pressure or the way I'm resting. I'm sitting on my backside most of the day, so I'm prone to blistering more there. I seem to have had blisters and sores on my bum, some as big as a saucer, every day of my life. And I always have to lift my feet when I'm sitting, otherwise they'd get covered in blisters too.
And then there are my hands, which everyone can see. When I get a blister, say on the end of my finger, the skin tightens around it pulling the finger down towards my palm. Then, wishing to go to the aid of the blister, the skin on my palm takes the shortest route and jumps across from my hand to the tip of my finger, sticking them together. I wake up the next morning, after the healing process has done its worst, to find my fingertip wrapped in skin and attached to my hand. It's stiff, and I can't move it because it hurts. Next, I'll get a blister between my fingers, and the same process happens there, so they also end up joined together, and on and on. Before long, my whole hand is cocooned in blistering and peeling sore skin. If you look closely you can see my little fingers, nails too, trapped in a sheath of scorbutic flesh and scaly skin.
Today my hands are all crunched up and misshapen because of all the knocks and bashes I've given them over the years, but I've fought it as much as I could. I'm right-handed so, bent, twisted or sore, I try to force my right hand into action to write, eat or do other work. My wrists are permanently bent now, too, because I've had sores there which pulled my hands down to join them. And it goes on. In fact, wherever there is a crease on my body I have the same problem. My elbows, knees, armpits, neck, and even my ears - they all behave like my fingers, pulling and joining together. It's as if I am slowly being fused into a ball.
My underarms are affected, too, permanently sore and stuck together. Which means that I can't put my arms above my head. If I was involved in a bank robbery and they said, Tut your hands up!' I'd be a goner!
Some people with this condition have operations on their hands to straighten them out, which means six months at a time wearing splints. And it never lasts for long their fingers soon start closing in again. I know what I'm talking about. When I was very young I had two operations on my hands, but they weren't successful. They only did a few fingers at a time, and I had all those months in splints and all that trauma to deal with. They wanted to continue to do more operations, but I wasn't prepared to go through it all again just to have my fingers return to being trapped. No way. Plus it was a lot of trouble for my parents who couldn't get through to the hospital to see me every day, which meant I had to handle the hospital staff all by myself. It was just too much for me, maybe because I was just a young child, I don't know. But the nurses and doctors didn't take any notice of me. They thought they knew it all, but they didn't. It was a rough time for me then, and I didn't enjoy it at all.
Some sufferers have bother with their feet, which can end up as bad as their hands. It just depends on how much pain you can put up with. I mean, some people have sores on their feet and that's them laid up. But if you want to get about you have to just get on with it and keep walking, which is what I've always tried to do. I have blisters on my feet and they hurt like hell, but I've always done my best to get around. I mean, I'm not gonna just sit here and say, 'Oh dear, blisters on my feet,' and let them crunge up like my hands. Of course I rely a lot on my wheelchair these days. No matter how hard you fight it, you cannot stop it forever.
My decrease in mobility hasn't happened overnight. It has been a slow and inevitable process, and I've had to adapt according to what I can and can't do. Every day is a new challenge for me. Each morning I wake up wondering how I am going to be able to do ordinary things, like getting out of bed or getting dressed. I've had 36 years of this now, and it gets harder every day.
So my arms and my legs are also slowly being pulled up beneath me, and it's the same with other bits of my body. Anywhere that doesn't have to be stretched or used will knit together - even my ears. When I was younger I had sticky-out ears, a bit like Prince Charles. But, because of the sores there, my skin has pulled them in. I suppose I've done my own face lift!
I'm joking about face lifts, but the sores tighten my skin so much that if I live to be a hundred (God forbid) I'll never get wrinkles. That's why I still look like a young boy. As for hair, I don't think I went through full puberty as any normal teenager would. I think my body felt it wasn't needed. It must have had enough to do coping with all the skin problems without my hormones kicking in. Everything has just sat still with regard to hormones. That's why I don't have hair on my face, and have a high-pitched voice. It never broke. Physically, I'm still a young boy.
If I had facial hair I couldn't shave it, for obvious reasons, and if I got a sore on my face, which I would, there'd be a kind of matted mess amongst the hair, and it would be weeping, too. Pretty gross, eh? I'm glad in some ways that puberty didn't happen to me. I mean, I'm not worried about girlfriends and that sort of thing. I've never got involved in relationships, because I don't think it would be fair on the other person to have to deal with everything I have to deal with.
I do have a high-pitched voice, and if I answer the phone people are always mistaking me for Mother, but I can live with that. It's only when I'm out in the town that it gets to me. It amazes me, really, the amount of people who mistake me for a girl. If I go into a shop in my wheelchair, or into a lift, parents always tell their kids, 'Let the lady past.' And it's always the parents who make the mistake. If it's their kids who see me first they ask, 'Why is that man like that?' They never mistake me for a woman. So if I could have facial hair, I would like a moustache, because women don't normally have those. Then people would get it right.
Our family never had great heads of hair but, because of the condition, mine has mostly gone already. Sores and scabs on my head have slowly ripped out my hair at the roots. I only have a little bit of hair left, but that's actually a Godsend as it means there is less to get matted from sweat and sores. I have to bathe my head in the mornings to un-matt my remaining hair. It's horrible, but if I didn't do it my whole head would be clotted with gunge. I keep on top of things as much as I can, but it's a nuisance.
That's why I wear the white cap to cover my head, and I don't take it off in public. That suits me. I wouldn't say I worry about what people think, but I wouldn't like to upset anyone. Not that it looks gross, but I feel that, in certain circumstances, looking at me with my cap off could be quite shocking. It's a white flat cap and people recognise me by it, even though they don't know why I wear it, or what it covers up. Anyway, it's a North East tradition to wear a flat cap, and I like it.
I do have some clear-ish areas on my body. My ribs, stomach and chest are the best because my arms protect them. But that just means that, if I'm in a crowd, my arms get it. Everywhere else gets sores, even my face. When I lie down it puts pressure on the side of my head and ears and I end up with spots, which transform into blisters, before turning into sores and hard scabs. My life is, and always has been, a never-ending story of pain and bandaging.
There are creams and stuff that some people with EB find helpful, but I don't use any. I find they keep the sores wet, which only delays the healing. I just use dry gauze dressings, swabs and bandages. Putting on creams and other potions doesn't seem to help at all. I tried them when I was younger, because you try anything at that age to ease the condition. But as I got older I learnt that a lot of things made the condition worse, so I'd end up having more to put up with. I found it better to leave them alone and just try and get on with my life. I don't attempt things anymore unless I know they are going to work. I'm afraid I wouldn't be the best guinea pig in the world when it comes to testing things for other sufferers. Someone else will have to do that. I've been a guinea pig before and, I can tell you, I won't be again.
They put me on cortisone when I was a boy. It was supposed to be the wonder drug of the age and was going to help swallowing and heal the skin and all sorts of things. I was on twelve tablets a day, and it nearly killed me. I had water retention, I was off my food, and I couldn't travel. The slightest motion made me sick, and I blew up like a balloon. I was longer coming off the damn things than I was actually on them. It was a nightmare. These days, if it's not proven, I'm not gonna touch it. It's down to other folk braver than me to do it now.
I've tried painkillers, but they don't work. It doesn't seem to matter what drug I take, I just seem to come out in a sweat. Doctors won't have it, but Mother has seen what the drugs do to me. Things like Aspinol or Panadol or whatever are supposed to bring fevers down, but they don't work with me. So far there has been only one thing that's worked, and I'm sure that was only because it put my attention elsewhere. A few years ago they put me on large doses of morphine, which sent me into a kind of stupor. I was hallucinating and talking to myself as if there was someone else in the room, but I didn't feel it got rid of the pain in the way I imagined. Morphine took me to a world of my own where I just forgot about pain. It blew my mind. The dosage was too high, plus it bunged my bowels up. I was really glad to come off it.
I'm in pain all of the time. But when I'm outside, in public, I'll have my 'mask' on. I'll be acting out a role, even though my leg - or whatever else - is giving me hell. I'll just get on with it, that's what I do most of the time. People ask, 'Are you in pain, pet?' and it's only then that I think about it and - oh shit! - I remember that it hurts. If they kept quiet it wouldn't be on my mind, and I'd be able to get on. People say these stupid things and they don't realise what it's doing to me. I'm in constant pain, and I've never known anything different. You're born with a headache, so what's a headache? You don't know because you were born with it. It's a bit like that. As soon as you're made aware of something, you can't get it out of your head.
Let's get back to the drugs, though. I'm sure that if you don't take them your body comes up with its own defences. I think the body creates its own 'morphine', which has got to be better for you than the stuff the doctors give out. Eventually, your brain stops receiving the messages of pain. Kind of switches itself off. Seems to, anyway. Keeping your mind occupied seems to be the best way to achieve this. Meditation works as well, that gets me relaxed. Sometimes I take myself away to imaginary places, just for a few minutes at a time, peaceful places. It's just a way of putting up with the pain and getting on with it.
I also have to watch what I eat. Due to the condition my stomach has a slower digestive rate, so what I send down has to have a lot of nourishment in it, otherwise it doesn't get digested and I end up with internal bleeding. I'm supposed to have my daily roughage to keep me regular, but I don't have any because going to the toilet is an event in itself and can take up to an hour. Even my insides get blistered, and I end up bleeding when I go, which is a bit of a do. But there's nothing I can do about it.
Itching is another thing that bothers me. It's another form of pain, and it's something that is with me all of the time. I can't sleep at night because of it, and I can't scratch it either. The itch is usually on my back, and my only form of relief is to pat it with my crunched-up hand. That's what sends me to sleep - I become hypnotised by the patting until I drop off. Or maybe I fall asleep from exhaustion. Whatever, it's not unusual for me to continue patting in my sleep.
I was fast asleep one afternoon when Father knocked on the window. 'I knew you weren't asleep,' he told me later, 'because I saw you patting your back.' Of course I was asleep, but I was on autopilot. I think I'd be awake all the time if I stopped patting myself when I fall asleep.
So I don't sleep well. Most people can turn over in their sleep, but if I turn over it's a major exercise. My bandages stick to the bed, my head sticks to the bed, and I wake up. So I cat-nap more than anything. Some nights I can lie all night without falling asleep. As I can't eat properly, my blood levels aren't what they should be, and I tire easily. You see, I can't eat things that make iron - which your body needs for blood production. I take a supplement but, as you can imagine, I'm losing blood all the time from my sores, or going to the toilet, or even just eating. A blister might form as I eat, and I'll be bleeding in my mouth, but I just have to carry on regardless. Seems endless doesn't it? And it is. Nosebleeds are another thing I have to put up with. If I blow my nose too hard there is always a lot of blood loss. Unfortunately, my body can't keep up with what's needed to keep me alive, so blood transfusions are what I need.
Once, when I was about 19, I went to the doctors to complain about a pain in my side and was admitted to hospital for a major blood transfusion. I only had about four pints of the stuff left in me. The lowest amount a body can have, apparently. And guess whose blood just happens to be rare? Yes, lucky old me.
So that's the condition: Dystrophic Epidermolysis Bullosa. One hell of a mouthful, isn't it? Talking of mouthfuls, let me tell you about mine. Dentists are not my favourite people. I was in hospital a couple of times as a boy having extractions, and they always took out far more than they should have. What a mess they left me in.
My mouth is small, too, and it's getting smaller. You know what it's like when you get chapped lips and get sores on the sides of your mouth? With me, my skin grows over the sores. So, you see, my mouth is contracting, getting smaller all the time. It won't shut altogether because I use it too much. (I know, I know...) But it is a lot smaller than it was. I remember, when I was younger, I could put a Malteser in my mouth without any trouble. Now when I get a Malteser I have to eat it like an apple. I have to nibble bits off it until I can get it into my mouth. That's how small my mouth has become.
My teeth are very awkward. I can't brush them in the normal way or I'd damage my delicate gums. It's very difficult to maintain them, and I know a lot of people with the same condition who have lost their teeth altogether. In that respect I am very fortunate. Father was once a dental technician, and he knew that smoking helped kill bacteria. He smoked a pipe and cigars and, from when I was just four years old, he would let me have the odd smoke in the evenings before I went to bed. Today, of course, I smoke cigars. And, touch wood (with my twisted stump of a hand), my teeth are not so bad. One or two have sheared off, but they are stable to the point where they're not getting any worse. The doctor I see has me on a special mouthwash. He told me that if a decayed tooth had a decayed nerve it would be okay. And so far, he's been proved right because I've had a decayed tooth in there since I was a small boy. I know my teeth are not pearly white but, to be honest, I wouldn't care if they were black. As long as I have teeth I can chew with, and they are still in my mouth, that will do me just fine.
So that's my body, and that's what I'm putting up with. And putting up with that and all the constant challenges is why I need my dossy days. But don't think I'm a whinge. I just get on with it, and I have for the last 36 years. I'll tell you how I've managed, but to do that we'll have to go right back to the beginning.
I WAS born Jonathan Kennedy at Preston Hospital in North Shields in the North East of England on November 4th 1966. I arrived with no skin on my right leg from my knee downwards, just bare flesh open to the elements. I came by caesarean section, because I was faltering in Mother's womb. By all accounts it was a rush job. No one knew what was wrong with me when I arrived, but the hospital read up on my symptoms and diagnosed me as 'junctional'. That meant my skin wouldn't replace itself and, because of the risk of infection, I would probably die very soon after birth. There was no hope. My parents were basically just told to go home, forget about me, and get on with their lives.
Of course, it wasn't as simple as that. Mother wasn't allowed to see me for the first two days of my life, but she would not forget about me. She couldn't. She visited every day, gradually learning how to handle me. There was nothing the hospital could tell her they didn't know how to handle me themselves. Eventually Mother was able to take me home, although she had to bring me back in the evening because she just couldn't cope on her own. But she never gave up, and soon learnt what to do. In those days there was no help at all. Today there is a charity that employs a specialist nurse to visit parents and hospitals - I'll get on to that shortly - but when I was born there was no support. It was just a case of: 'You want him, you can have him. Just get on with it.'
I was a lot for Mother to handle at the time, not least because my brother Simon was only 22 months old when I was born, and a handful in his own right. But she's an angel that woman. I can't remember much about those days, I'm glad to say, for it must have been hell. They wouldn't even let Mother breast-feed me, so I was weaned on carnation milk. I'm certainly a good advert for that stuff, aren't I?
I've been told that I had a permanent blister down the centre of my tongue that had to be burst every time they wanted to feed me. Apparently, it was so big that at times I couldn't even close my mouth. Then, when I went onto solids, my throat became so sore that I couldn't even swallow my own saliva. It must have been a nightmare for me, for Mother, for everybody. I don't know how I survived it.
Eventually my diagnosis was narrowed down to Dystrophic Epidermolysis Bullosa. Mother and Father had no idea about the condition: how to treat me; what was good; what was bad; what hurt; what didn't. They received no support or financial help. It wasn't until the Joseph Rowntree Foundation - a charitable trust - visited us years later that Mother learnt she'd missed out on claiming an allowance for me, and a carer's allowance for herself. Until then they persevered on their own. It was just a case of trial and error. And, oh boy, what errors there were!
Back then we lived in Seaton Sluice, on the North East coast, where Father heard that salt water toughened the skin. Every night he'd go down to the beach and return with two buckets of seawater to bathe me in. Oow! I still have the memory of that pain. He did this so often that, one day, a curious neighbour asked Father if we were keeping a shark or some strange sea creature in the house. But it was only little old me.
Father also got it into his head that exposing my skin to fresh air would help. One time he stripped off all my bandages and stuck me out in the garden. The flies enjoyed that episode more than I did, I can tell you. I've hated flies ever since.
When I reached 'pram age' people always stopped to ask Mother how I was. Because I was bandaged, strangers always thought I was a battered child. When they found out that it was a 'disease', as they called it, they kept their own children miles away from me in case it was contagious. They didn't want their little darlings catching anything that Jonathan had. I know I sound a little bitter here, and I am. I know it wasn't their fault, and in their shoes I'd probably have done the same. But it was just... I was so lonely as a child.
I was left on my own a lot when I was young. We'd go to places as a family, and Father would say I had to stay in the car while they checked to see if it was safe, that there weren't crowds of people that could squash me. And I'd wait and wait in the back of the car like a pet dog. By the time they got back whatever we'd gone to see would be over. Of course, their excuse was always that it wasn't very good and wasn't worth going to see in the first place. Shit man, it couldn't have been that bad 'cos they were away for ages! Oh boy, the times that happened. I didn't like those situations at all.
A lot of the time I'd be left at home. Sometimes Simon would be there, but other times he would be out with his friends. Mother would be away on her horse, and Father would be out on his bike or out with the dogs. I'd be left to entertain myself. There were lots of times like that. We just couldn't seem to be a family, at least not without me being left out. They all had their pursuits, and they'd always be away for longer than they said they would. I'd be sitting, staring at the clock, waiting. If it wasn't for television, I don't know what I would have done. I'm sure I would have gone mad. It was bad enough having to cope with the condition - being left on my own like that always used to hurt.
I don't know why, but Father could never call me by my true name. To him, for whatever reason, I was 'Moysher' or 'Jacko', anybody but Jonathan. So I called him 'Cato'. It was the first thing that came into my head. I can play that game too! Jonathan actually means 'a gift from God'. Looking at me you'd be made to wonder. Later on I got everyone to call me 'Jonny'.
My parents have learnt a lot through having me as their son. But, on the other hand, I've also deprived them - and Simon -of so much. Simon, who I nicknamed 'Pongo', had a hard time at school because of me. He was always in fights in those days, when kids shouted at him that he had a 'scabby brother'.
Pongo and Cato spent a lot of time together. There was one time I remember when Cato was into this cooking lark and began making curries, and Pongo helped him out.
Mother was out, and they called me into the kitchen to test their recipe, offering me a teaspoon with powder on it. Pongo was revelling in it, saying how wonderful it was. At the time we had all been going through a phase of eating Horlicks from a spoon, and I thought this must be something similar, so I took it. It was a spoonful of curry powder! That was not a good episode. It was terrible. No amount of water could get rid of the burning taste. I don't know whose idea it was, but it was just one of their little games. 'Let's have fun!' I was a thing of amusement to them.
In his own way, Pongo was getting back at me because he couldn't thump me like you would a normal brother. Father just thought it was a big joke. But there were one or two times when it got a bit silly, and it didn't help that I was very gullible. Cato would do this 'hocus-pocus' magic thing with us. He said if I was ever naughty he'd turn me into a frog, and I believed him. Well, one day when Mother was out again, Pongo and Cato were messing around as usual, and I must have been doing something 'naughty'.
'Mind, if you do that, we'll turn you into a frog,' Cato reminded me. I didn't stop whatever it was, so they did the 'hocus-pocus' thing and Cato said, 'Yes, you're a frog now.' And, of course, Pongo agreed. They both insisted that I was a frog, and I believed them, totally. It was only when Mother came back that I was able to ask, 'Mam, am I a frog?' They were so convincing that for a long time afterwards I still thought I was a frog.
As I began to get older I was allowed to stray a bit further from our house. By now we lived in Whitley Bay, further down the North East coast. There was a cemetery nearby, and that basically became my playground. I'd play around the graves and crematorium. A morbid sort of existence, yet I enjoyed it. It was quiet, because no other kids would go there, you see. My parents knew it was reasonably safe and I wouldn't get hurt. Other children would be in a playground, kicking balls and playing on swings and bikes, and I'd be alone in the cemetery. I thought it was good, though. It was laid out with paths and roundabouts, wide enough for a hearse to get around. It became like a mini-highway for me and my little go-kart, and I practically lived in that place.
I did get into some scrapes though, sometimes literally. One time I remember running past the next door neighbour's house, then tripping over and sliding along the ground. I didn't put my hands out to save myself, either. I only have a little nose, but I took the skin right off it, as well as off my lips and chin. It all just hung there. Oh, what a state I was in. There was grit and rubbish and everything in it, too. It was a bad incident that one. I actually slid along on my face.
One of the most annoying habits my parents had when I was younger was wanting to burst my blisters. If I had a blister on my arm or neck they would get their thumb and finger and nip it. Didn't matter where they were, what they were doing, or what time of day it was, they always had time to nip. I don't know if they took pleasure from it - although they seemed to at the time - but it stung like hell. Some of the blisters were quite big, and they'd seep all over me. The idea behind bursting them was to stop them from spreading. 'Let's get rid of them now!' was the battle cry, instead of going to the hygienic bother of getting scissors and a gauze swab to dab up the mess. 'Jonny's got a blister! Let's nip it!' I mean, they could have had dirt under their fingernails or anything, then my war wounds would go septic. But at least it kept my parents happy. God, the things were painful enough without all that nipping. 'Oh, there's another'. Nip! 'Got Jonny again!' I would be left with a wet patch somewhere and a stinging mess, and they would just go off and carry on with whatever they were doing.
As you might imagine, I've spent a lot of time in hospital over the years. My first memory of being there was when I was three or four, when Mother, Father and Simon went to Norway for a holiday. And boy, did they need that holiday - their first ever. I was left in a hospital because no one else could cope with me. I remember wondering why I was there, because nobody was doing anything to me, and my parents didn't visit. I was totally confused, and every day I'd climb onto this chair by the window and stare out, wondering if they were coming back for me. Then, on the day they did come to pick me up, I was so excited, jumping up and down on this chair, that I slipped and skinned my leg. Of course there were tears and mayhem again, because I was in such agony. It was an absolute nightmare. But they brought me back a toy swan and truck with big red wheels. I remember the presents clearly, but I've no idea what happened to them. Funny old world, isn't it?
When I was a boy no one knew how extensive my condition was, so Mother gave me the same meals as everyone else was having. I always remember being the last sat at the table. It wasn't only a case of being a slow eater, either. I just couldn't manage it. I remember one dinner time when it was lovely outside and I wanted to be out in the sunshine. Everybody had finished their meal, but I had minced beef left on my plate. I'd eaten the potato, managed the cabbage and carrots, but there was this mince left. And boy, was I struggling. My pudding was sitting there as well, with evaporated milk to go with it. Pouring evaporated milk on things made them easy to swallow. So what did I do? I went and poured evaporated milk all over the mince. It was foul! How one learns as a child! But it was a slow process, and in those days I had to try and eat what everybody else was eating.
Had we known more about the condition, we might have blended foods a lot sooner and done without others that were harmful, like meat, which I don't eat anymore. I have to be careful about what I eat, but I'd get it wrong when I was younger. 'Oh yes, you can eat all those biscuits, but you can't eat your dinner,' Mother would say. But it's all to do with the texture of the food and what it does in your mouth. Put a lump of meat in your mouth and what will happen? It will sit there until doomsday unless you can chew it. Put a hard biscuit in your mouth and, without even chewing or moving it, the saliva softens it and you can squash it with your tongue. It's very difficult to make people understand that. Mind you, people must reckon I'm tight when I'm out in the pub, because I take up to two to three hours to eat a bag of crisps. I have to eat delicately, you see, so they don't cause traumas in my mouth.